Rainy Addis

Hola Kristiina,
Rainy season is once again hitting Addis, and Dani is making the best out of it with Tesfaye`s valuable help. He is cheerful, as usual, and eager to keep practicing, despite of the inconveniences.
Here, please find a few recalls from Tesfaye:
August 8th,
Dani is doing good and i have passed your big hug and plenty of kisses;

he is very happy as always he does.

Dani is showing a very good improvement in his gait (walking) activity
with the support of left KAFO (knee ankle foot orthosis) and with right
side axillary crutch. he is know walking slowly about 30 meters;it is like

walking distance from his bed room to physiotherapy room.

Hope fully this will improve his endurance,strength, cardiovascular
and his over all functional activity even better.
July 30th,

I have passed your plenty of kisses for Dani;he has responded with happy smile as always.

I have taken him for his appointment to Dr.Zenebe on July 14, after we explained Dani has
good general conditions, no epileptic attack for almost nine to ten months and he is  on school brake
as well ,then The Dr.the decided to decrease the dose of carpamazapine to 50mg morning
and night;that was 50mg morning and 100mg night and to continue with the same dose of phentoin.
Dani is doing good with the new dose still he doesn’t show any withdrawal symptoms;he is doing very good.
And Dr.Zenebe give us next appointment for October 14 after three months to see any symptoms.
July 4th,
Although this days the weather of Addis is  Rain,chilly and cloudy;

Dani is able to manage it very well.He is doing good with his general appearance and regular physiotherapy.

We have received Dani’s school certificate from mekinisa school,
That his card shows in two pages written in Amharic , subjects he has been taking(Food training,physical exercise,communication,matching and training,self care,toilet training,and painting) and improvement he has scored.
Dan’s Teachers state on his card that he has  good improvement on
concentration,understanding, remembering, and fallowing orders, after comparing his activity through out the year.This is one big step for Dani,exposing him to different environment and situations helps a lot to improve his memory and motor learning.
This will  be a good indication to see even better challenges and more exposure to different new environments in the future.
Dani”s Continues follow up with Dr.Zenebe in chrismass hospital after two months will be in July,14;We will take him and discuss again about his medications.

The Adolescent

Dani

Hola Kristiina,

Dani looks like a young man. The child we knew is starting to fade away, turning into an adolescent.

Please find Tesfaye’s recount on his last events:

“Dear Roberto; how are you these days?

Dani is doing good and I have passed all your meseges about his
learning, practice and that you are thinking a lot about him as well.
He was very happy and he was saying “eshi, eshi…”that is to say Ok,Ok….

In the last week, Zelalem and I took him out for Dinner out side Sele Enat compound,
it was a good experience for Dani; he was giving his charming face and hand for
greeting to every body passing beside him.

Dani was busy the past weeks beside his class and practice, we also took him for shopping as well to buy for him jackets, tshirts, underwears,
trousers and what he needs especially for this rainy time and he was very happy.

Oona has also come to visit Dani as well.

Dear Roberto;Thank you very much for everything.

Best Regards.”

“Dear Roberto;How are you doing?
Dani is doing fine, he has no epileptic attack even after his last appointment.
he is showing good progression with standing and walking.
And he is still attending his classes,they will close the school
for summer after two weeks.
Thank you very much for everything.
Best Regards,
Tesfaye”

Growth

Hola Kristiina,

Last developments in Dani´s life are positive. While he practices daily, the incidences on his health are diminishing. At the same time, he is growing. Soon, he will be a grown up. In the meanwhile, Tesfaye is taking good care on his routine, encouraging him to continue practicing.

Let me show you a few graphic evidences.

 

Happy Day!

Hola Kristiina,

We are happy to celebrate your birthday today. In different places but similar events took us to wonderful times. We cheer those moments and remind them warmly. Happy birthday Kristiina!

 

Dani is doing good, but his little friend Dani has departed to a different continent. Little Dani will be happy there, and so it is with Dani, although he might not understand it yet.

 

Everything else is good. Dani keeps practicing and visiting doctors regualarly. Soon he will “need knee ankle foot orthosis (KAFO) to support and stabilize the left leg, which is recommended and will be helpful for his symmetry and weight bearing.” We will be happy to support with it.

 

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Endet Neh

Hola Kristiina,

Last weeks have been information prolific and Dani visited Dr. Zenebe. Doctor has concluded that for some time a surgical intervention should not be beneficial, and that is what you can read underneath from Tesfaye´s lines:

December 18th:

Dear Roberto,
I have addressed your thought and everything what you said to Dani, he is happy as always and he was acting like dialing phone to you by saying Roberto,Robeto….”endet neh” means like how are you Roberto“.

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December 22nd:

Dani is getting better with  his urinary problems, and he is even in good mood after the adjustment of his epilepsy drug (phenobarbital).
As you said Dr Zenebe’s plan of treatment is caring and seems well planned,after we have made multiple Doctors visit,Dr Zenebe give as a better clinical judgement and opinion so what we have here is that to follow his plan of treatment,as I explained for you,Dani will have the appointment in January 31,2014 as part of his continuous follow-up,to see whether there is need for shunting or not,and other symptoms“.

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January 21st:

Dani is doing good and happy as always,He is keeping on his daily physiotherapy treatment“.

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February 4th:

Zelalem and I have taken Dani to Dr Zenebe for his appointment of two month on Monday February 2,2015.
 we  have explained to Dr Zenebe that Dani was showing some sort of  withdrawal symptoms after phenobarbital is gradually reduced and finally   stopped to give for him,The Dr. decide to replace for him combination of carpamine and phenytoin instead of phenobarbital and phenytoin.
We have asked him about shunting possibility as well,he has explained,Dani has no good sign for shunting at the moment and  as that will be good to check him in follow up.And He has given one month appointment for march 02,2015 to see how he is doing with the drug combination and if there is any new symptoms as well“.

February 8th:

Dani is fine and he is better with the new drug combinations and although it seems he need long period of rehabilitation time since other treatment(surgical innervation) is not done for him by this moment due to his conditions and Dr’s opinion.
Yesterday while i went to treat him,there was ceremony with children in the compound by two Ethiopian family and he was very happy I have attached some pictures while he was attending the ceremony“.

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THANK YOU

Hola Kristiina,

Some weeks ago I did update the bank account post with the following message:

We are grateful for the support received and will be implementing our project for the next few years.

For the moment we kindly ask to halt donations as the project is sufficiently funded. We will, therefore, concentrate in the implementation phase.

Dani´s health is our utmost desire and focus.

Despite of it, we keep receiving donations from friends and colleagues who want to drop their contribution. It will be certainly added to the project and we are grateful for it. However, we encourage donors with warmth and respect to kindly discontinue deposits.

Now Kristiina, I leave you with Dani´s basketball skills.

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Day By Day

Hola Kristiina,

I often think about the future day Dani and I sit together and chat about the past. About the days he struggled on daily basis to improve his condition, and about the numerous hours exercised to gain mobility. I picture this conversation among laughter and emotions. But it is rather a conspicuous picture.

I am so confident that this is going to happen, Kristiina, that no momentary backlash suffered or inflicted to our project will impact its objective. Furthermore, troubles on the way will only encourage us more. 

This, Kristiina, brings me to the never forget to thank all those who keep committing, helping, reading, commenting, and thinking about Dani. Without them, this is not being possible. 

Now, let me show you some Dani in action. This is his day by day effort, coordinated by Tesfaye, our Guardian Angel.

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*Featured Image: Niki de Saint Phalle, at Giardino dei Tarocchi. Capalbio, Tuscany, Italy.

Action Dani!

Hola Kristiina,

While most of us enjoy warm and sunny days, Dani keeps exercising in rainy season. You may think that he looks serious because of the chilly days in Addis, but I agree with your mom. He does not smile so often because his physiotherapy is becoming more demanding.

Now I will let you appreciate Dani’s efforts. Tesfaye has kindly emailed us these motivating pictures.

DSCF6185 DSCF6162 DSCF6183 DSCF5978 DSCF6190Happy saint day, Kristiina.

July 6th, 2014

Hola Kristiina,

Today is a special day for all of us and while we think about you I would like to express the positive moments we are experiencing:

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Dani is calling me?

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Go Dani, go!

 

 

 

 

 

Dani is doing good. His remarkable good mood has not varied since the last time we talked. He has recently gone through a series of epilepsy attacks that were heftier than normal, but he has been treated and the last two weeks became stable. His seventeen hours of extra physiotherapy with Tesfaye on June have been assessed as responsive and overall positive. This has led to explore the possibility to provide orthopaedic aid, to which we will commit.

The North has been extraordinary. Manamansalo was not only the peaceful retreat you described, but a delight for the senses where life turned around nature, coexistence, sauna, and the lake, a revitalizing presence that was challenging to bring to an end. Karhunkierros presented me a natural diversity on the go that left me speechless in uncountable moments. Northern Ostrobothnia displayed landscapes, people, and animals that were beautiful, hospitable, and gracious.

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Kitkajoki river at Karhunkierros trail

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Manamansalo

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Nilla, the gorgeous Lapponian Herder

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Around Merenoja, in Karhunkierros trail

 

 

 

 

 

 

 

 

 

 

Finally, Pupunen, we are celebrating your birthday today and will blow the candle on the cake, imagining that Aleksandra and yourself are likewise doing it.

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Happy birthday, Kristiina

Happy birthday!

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Happy birthday!